rejection!

I had my biopsy this last tue the 17th and got a call yesterday morning that I had to go do IV infusion of 1000mg of some drug that is like prednisone, for 3 days in row.
Then starting Sat i go on heavy pill form prednisone with a taper.


Had 1st infusion yesterday and not sure if I even slept!!!!!!! grrrrrrrrrrrrrrr

I go back next tue 24th for another biopsy and hope the drugs knock it out!


I have some pic I will post later of Bri playing w my make-up she is so beautiful :)


Ok I got a new keyboard that I need to get used to, that is why lag on update, its hard to type lol

The latest

I need to make something other than cards!!!! I got them coming out of EVERYWHERE!!


My B-day dinner was very good. My mom and dad came and took us all out for dinner and was very nice.


I texted Juanita ( my donor mom) and tell her it was my b-day and thanked her for her decsion to make it possible for me to see another.
We plan to meet in April.


I have not went to labs lately as white blood cell count was good last time so I will just wait for Feb 17th when I go for next heart biopsy. I have a feeling my cylosporne (spell) is high as I am a bit shakey! ( Well more than usual )


Bri softball team just had there first lil friendly double header and won both games, so that was good.


I am hoping Debbie is well enough to pick me up tomorrow to take me with her to Santa Clara Kaiser for our once a month heart transplant meeting.
I have not been in 2 months! Scott is already taking time off work as it is to bring me to biopsy's so when that is not once a month then he can start going to support with me as well. ( i dont drive freeway) noooooooooooooo way.


I have been very frustrated lately. The heart surgery went well and my heart has been all good so far, but my FA is sooooooooooo much worse.
I am barely walking now a days and my legs ache all the time!!! Weight loss has been so hard not able to excerise ( i want to but then after a few days I am down for two).



My mom and dad took Dudley our pug who is 5 year old and never potty trained.
After we had to put Jess down, he is all alone now and I am the only one here all day long and I cant give him what he needs. They are willing to give him a shot to keep him in family or I am either going to ship him to my sis or give him over to pug rescue.
I really hope he gets it!!!


Well I guess that is it for now so until next time, BE SAFE

Brianna

She just got her hair cut and I love it when its done!! So beautiful!!!!!!!!!!!!!

This is my goal, to grow out my hair just like her's :)

That is just some stuff I made over the last couple days.

I did not win the football pool :( if that first steeler touchdown were to count I would have had 50.00 that quater!!

Well some good news. I have been having very low white blood cell count for a while now. I think we finally figured out it was the Idebenone I take for FA.

The drug family helped me get a couple years ago. I still take it 2 years later and now im cutting dose in half and cell count is now 5.0 which is lower but low end of normal!! That is a good thing!

Besides that and what I have been making that is about all the new stuff I got to share :) until next time!!!

I made more

Those are so fun to make. The best thing is its made out of scraps!!
I am working on 4 more now :)


We just got home from the grocery store. We got food and stuff for superbowl.
Its just gonna be us at home no biggie!


Today was beautiful outside. We took dudley aka pee pee boy hehe to the dog park. I enjoy seeing all the different breed dogs. Plus it got me out of this jail for a while!!

Tomorrow we get up early and go to pitching lessons for Bri then we are stopping at the park on the way home and Scott will hit her some infield. Got to take advantage of these nice days.

Then its superbowl time. I hope I win the pool hehe that is the fun part of the whole thing!

Have a good sunday and be safe tomorrow if you go out!!

Todays scrapping

Well I finally got in gear and made a little something. I have not decroated the tags inside yet as if I leave blank for now then I can chose the occasion later as I need it. This can be used for anything. B-day card, Valentine card and treats inside or gift card holder. Let the imagination roll!!

Gonna make some more it was fun and easy!

Boring days

Well nothing has been fun and exciting around here.
I am having a problem with my legs aching. Heart is fine but legs are hurting.
Not sure if its the weather or stopping prednisone last week.
I read online somewhere that said sometimes when you stop prednisone you have muscle aches for a short time.
I am ready for spring and open my windows and to not be cold all the time hehe
I have not even scrapped since my five layouts I did.
I need to get out of the funk and do something hehe
Hope I have something more exciting to share next time :)

This is my Debbie!! Everyone always says who is Debbie? Well this is Debbie she got a heart transplant 4 weeks after me. I have a link to her blog as well.

I just wanted to say thank you to Debbie and tell you all what she did. My b-day is coming up Feb 6th and she got me a medic braclet and inside it says

Heart transplant 8-08

Friedreich's Ataxia

Tippi Schlattman

I love it!!!!!!!!!!!!!!!! Thank you so much Debbie :)

Other than that my knees hurt so bad yesterday all day that last night I took two neurontin and a vicadin and slept till 11:30!!!!!!!!!! never again!!!!!!!!!

I just got home from lab, Rob took me as my white blood cell count has been so low and we are doing different things to see if we can figure out why.

I gotta get Bri in 45 min and really dont want to drive but I have no choice. Rob is going to box and he has to take me to Kaiser again tomorrow that I dont want to make him late just to get the girls. He does so much as it is.

I love that kid. He is a great son :)

Ok enough for now I guess, oh its Scott and I anniversary today so we are gonna go out to dinner tonight! Not that we need a occasion to go eat hehe

Talk later Tip

Jessie

Awwwwwwwwwwwwwwww my Jessie boy!!

We have had this dog since he was 9 months old. We got him from the Lab Rescue. He is the best dog we ever had. We had to put him down Jan 21st this year. This picture was taken right before Scott left to the vet.

He was just so old and in pain. Crying at night and potty in house and just not wanting to get up walk, move, stand nothing!!

We will always remember our Jess!!!!!!!!!!!!!!!!!!!

He was the best ever!!

Layouts

Wow this is a record breaker for me. 5 layouts in 3 days!!!

Good News

Ok let me start from begining so you all understand. My heart biopsy done on December 23,08 showed some antibodies present. However I had a good biopsy result. This biopsy I just had Jan 20th 09 also showed a good biopsy result.
However lsat week I had to do special lab work that was sent to stanford to check for antibodies and if they were having any kind of rejection.
I am happy to say that I got results tonight and negative!!!!!!!!!!!

They will check (DSA) that is what the test is called again next month only because my body has a high immune system than normal. To make sure nothing there so I dont reject.

I have done 3 layouts for scrapbooking. I will take pictures and post it soon.

I am glad its Friday! I like my family home with me hehe so I am not so lonely.
We went to dinner tonight and now drinking a starbuck coffee as I write this.

Oh I also started a new drug for my FA neuropathy pain, its called Neurontin aka Gabapentin. I think its helping a little not sure yet. To soon to really tell.

Things are going pretty good and family is doing well so have a great weekend and I will post my layouts later :)

My blog

Everyone I know has a blog. I dont want to make this a specific scrapbook blog or health update blog, I just want it to be random. Life in general, updates on me and stuff I make scrapping and pictures of my family.
Just a place to hangout :)